A haemangioblastoma is a type of brain tumour. Haemangioblastomas can occur in the cerebellum, brain stem or spinal cord. They are commonly slow-growing tumours and do not spread to other parts of the brain.
The information here should ideally be read with our general information about brain tumours.
We hope this page answers your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are having treatment.
The central nervous system (CNS) is made up of the brain and spinal cord (see diagram below). Cells within the brain normally grow in an orderly and controlled way, but if for some reason this process gets out of control, the cells continue to divide and form a lump called a tumour.
A tumour may be either benign or malignant. Benign tumours may continue to grow but the cells do not spread from the original site. In a malignant tumour, the cells can invade and destroy surrounding tissue and may spread to other parts of the brain.
Most brain tumours are named after the type of cells from which they develop. A haemangioblastoma tumour is formed from cells that line the blood vessels at an early stage of their development. It’s almost always a benign tumour, which may be like a cyst (a fluid-filled area) and more than one tumour may be present.
About 4,300 benign tumours of the CNS are diagnosed each year in the UK and of these only 2 in 100 (2%) are haemangioblastomas. The tumours can be found in adults and children and most of them occur as part of a rare hereditary condition known as von Hippel-Lindau disease (VHL).
Signs and symptoms of haemangioblastoma
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Haemangioblastomas are slow-growing tumours, and any signs and symptoms usually develop slowly over several years.
The main symptoms arise from increased pressure within the skull (raised intracranial pressure). This may be due to a blockage in the ventricles (fluid-filled spaces in the brain), which leads to a build-up of cerebrospinal fluid (CSF). CSF is the fluid that surrounds and protects the brain and spinal cord. The increased pressure may also be caused by the tumour itself.
Raised intracranial pressure can cause headaches, sickness (vomiting) and sight problems. A condition called nystagmus (jerky eye movements) is commonly seen with this type of tumour. Changes in behaviour and personality are both general signs that a brain tumour may be present.
Haemangioblastomas are usually found in the cerebellum, the area of the brain that controls coordination and balance. A tumour in this part of the brain often causes problems with walking. People may stumble, or walk awkwardly and have problems keeping their balance. Tumours in the spinal cord may cause back and neck pain, numbness and weakness in the arms or legs, or both.
Tests and investigations for haemangioblastoma
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Your doctors need to find out as much as possible about the type, position and size of the tumour to plan your treatment. You may have a number of tests and investigations.
The doctor will examine you thoroughly and test your reflexes, and the power and feeling in your arms and legs. They will look into the back of your eyes using an ophthalmoscope to see if the nerve at the back of the eye is swollen. This can be caused by oedema (swelling of the tissues within the brain), which may occur due to an increase in the amount of fluid in the brain.
You will have a CT or MRI scan to find the exact position and size of the tumour.
CT (computerised tomography) scan
A CT scan takes a series of x-rays that build up a three-dimensional picture of the inside of the body. The scan is painless and takes 10-30 minutes. CT scans use small amounts of radiation, which will be very unlikely to harm you or anyone you come into contact with.
You may be given an injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. If you’re allergic to iodine or have asthma, you could have a more serious reaction to the injection, so it’s important to let your doctor know beforehand.
MRI (magnetic resonance imaging) scan
This test is similar to a CT scan but uses magnetism instead of x-rays to build up a detailed picture of areas of your body. Before the scan you may be asked to complete and sign a checklist. This is to make sure it’s safe for you to have an MRI scan. Before having the scan, you’ll be asked to remove any metal belongings including jewellery.
Some people are given an injection of dye into a vein in the arm. This is called a contrast medium and can help the images from the scan show up more clearly. During the test you will be asked to lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It’s painless but can be slightly uncomfortable and some people feel a bit claustrophobic during the scan. It’s also noisy, but you’ll be given earplugs or headphones.
This test uses an injection of a dye and x-rays to see the blood vessels in the brain that supply the tumour. The dye is injected through a thin, flexible tube (catheter) that is inserted into an artery in the groin, arm or neck. A series of x-rays are taken. Your nurse or doctor will explain this test in more detail.
Treatment for haemangioblastoma
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The treatment for haemangioblastoma depends on a number of factors including your general health, and the size and position of the tumour. The results of your tests will enable your doctor to decide on the best type of treatment for you.
There are some risks associated with treatment to the brain and your doctor will discuss these with you.
Your treatment will usually be planned by a team of specialists known as a multidisciplinary team (MDT). The team will usually include:
a doctor who operates on the brain (neurosurgeon)
a doctor who specialises in treating illnesses of the brain (neurologist)
a doctor who specialises in treating brain tumours (an oncologist)
a specialist nurse
other healthcare professionals, such as a physiotherapist or dietitian.
If pressure in the skull is raised, it’s important to reduce it before any treatment is given for brain tumours. Steroid drugs may be used to reduce swelling around the tumour. If raised intracranial pressure is due to a build-up of cerebral spinal fluid (CSF), a tube (shunt) may have to be inserted to drain off the excess fluid.
Before you have any treatment, your doctor will explain its aims and give you full information about what it involves. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent.
Benefits and disadvantages of treatment
Treatment can be given for different reasons and the potential benefits will vary depending on your individual situation. If you have been offered treatment that aims to cure your brain tumour, deciding whether to have the treatment may be easier. However, if the treatment is to control the cancer for a period of time, it may be more difficult to decide whether to go ahead.
If you feel that you can’t make a decision about the treatment when it is first explained to you, you can always ask for more time to decide. You are free to choose not to have the treatment and the staff can explain what may happen if you don’t have it. You don’t have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.
Surgery is almost always used to treat haemangioblastoma. As the tumour does not spread to other parts of the brain, in most cases it’s possible to remove it completely during an operation. However, some haemangioblastomas are difficult to reach with surgery – for example, those in the lower part of the brain (brain stem) – and in these cases surgery may not be possible. If this is the case your doctor will discuss other types of treatment with you.
Radiotherapy treatment uses high energy x-rays to destroy the cancer cells. It may be used after surgery if the tumour has not been removed completely. It may also be used to treat haemangioblastoma if surgery is not possible.
Newer methods of radiotherapy used for haemangioblastoma include stereotactic radiotherapy. This type of radiotherapy is more suitable for small tumours and enables doctors to direct higher doses of radiation more accurately at the tumour, minimising the treatment side effects.
You may find the idea of a tumour affecting your brain extremely frightening. You may experience many different emotions including anxiety, anger and fear. These are all normal reactions and are part of the process many people go through in trying to come to terms with their condition.
Many people find it helpful to talk things over with their doctor or nurse, or with one of our cancer support specialists. Family members and close friends can also offer support.
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In some circumstances you may not be allowed to drive for a period of time. If you have had an epileptic fit, for example, the Drivers and Vehicle Licensing Association (DVLA) will not allow you to drive for a year after your last fit. You can then drive again provided you remain well.
After surgery to the main part of the brain (the cerebrum), there is a small risk of epileptic fits and the DVLA requires that you do not drive for at least a year after this type of surgery.
You may not be allowed to drive some types of vehicle, such as an LGV (large goods vehicle) or a PCV (passenger carrying vehicle). It’s your responsibility to contact the DVLA about your situation and your doctor will advise you on how to do this.
The DVLA advises GPs and other members of the medical profession on the medical standards of fitness to drive. Patients should seek advice from their doctors.
This information has been compiled using information from a number of reliable sources, including:
NICE. Improving outcomes for people with brain and other CNS tumours: The Manual. 2006.
Bernstein & Berger. Neuro-oncology – the essentials. 2nd edition. Thieme. 2008.
Souhami, Hochhaser. Cancer and its management. 6th edition. Wiley-Blackwell. 2010.
Wong, et al. Haemangioblastoma (online) http://www.uptodate.com (accessed September 2012).
Cancer Research UK. Brain and other central nervous system (CNS) tumours: Key facts. 2012.
With thanks to Dr Nick Plowman, Consultant Clinical Oncologist, and the people affected by cancer who reviewed this edition. Reviewing information is just one way of the ways you could help when you join our Cancer Voices network.